Survey for Independent Living for Young Adult Duchenne Muscular Dystrophy

2021 Fiscal Year Final Research Report

• Project/Area Number: 18K17566
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 58070:Lifelong developmental nursing-related
• Research Institution: Kyoto Prefectural University of Medicine
• Principal Investigator: Yamaguchi Miku 京都府立医科大学, 医学部, 助教 (20771132)
• Project Period (FY): 2018-04-01 – 2022-03-31
• Keywords: 在宅ケア / 重度障がい / デュシャンヌ型筋ジストロフィー / 重度訪問介護 / 医療的ケア / 家族 / 介護負担

Outline of Final Research Achievements

Through the home-visit care service, this study conducted a nationwide survey regarding the independence and quality of life of children and adults with severe disabilities or chronic diseases (including DMD patients). Its originality lies in its statistical results indicating the burden placed on the family of such individuals. Additionally, the study noted that especially for childhood-onset diseases, mothers provide continued home care for an average of 25 years, and over half of them do not receive support within the family. Furthermore, it was clarified that the hours of care received through the home-visit service differed greatly depending on the residence area, even if the severity of the disease was the same. Further study is needed to support the independence of people with high health care needs.

Free Research Field

小児看護学

Academic Significance and Societal Importance of the Research Achievements

近年、医療的ケアが必要な子どもの7割は在宅療養であり、成長とともに長期にわたり支援が必要な人が増加すると考えられ、ケアニーズの高い子どもが成長後も安心して地域生活を送ることができるようになるための支援が求められている。本研究では、筋ジストロフィー患者の若年成人における自立の重要性と、家族の役割の変化を示した。さらに全国調査等を通して地域生活の状況や家族の負担を明らかにすることで、支援課題を明確にした。